Wednesday, February 5, 2014

update on Ava

Hi all...
It's been weeks since I shared my story about my sweet Ava. I was overwhelmed with the love and prayers we received! I had read every comment here on the blog and on Facebook...and every email. And I apologize for not getting back to each one of you. I want to respond to each of you! You took the time to reach out to me and I thank you for that! I'm so thankful for that! I'm even more thankful that you pray for us. You have asked friends to pray for've added us to prayer groups at church...your little ones are even praying for Ava...I'm so touched and thankful! I've never felt such peace in a scary situation because I know so many people are reaching out to God on our behalf. He is hearing your prayers and answering them each day. Her speech has improved! She still struggles...but we saw a miraculous improvement. 

The night I posted about her struggle, I had made a video earlier that day of her. It makes me cry to watch it...she wanted to audition for a speaking part in the first grade play. She was telling me the lines she needed to say. I videoed her practicing. Bless her heart...she couldn't say those lines but she practiced and practiced... and still wanted to audition. As a mom, I wanted more than anything for her not to heart couldn't handle her getting on stage and struggling to speak... you can imagine how it could turn out. Being laughed at could damage her little heart forever. I know you are supposed to let them try things and make mistakes...and get up again...but this was more than I could handle. So.... I posted here about what we were going through. And within two days, she said the lines perfect! No struggle at all! I was amazed...and thankful for you all! But I will admit I was scared people would stop praying for her if I told them she was doing great. Embarrassed to say that. 
She did audition...and she said she did good.  I wanted to contact her music teacher and explain the situation...and ask her not to choose Ava. It's too scary to think of her on that stage. Her speech comes and goes.  She's had another seizure but it didn't seem to take away any more speech...thank God. But when she gets nervous, she really has a hard time talking. I didn't email the teacher...and I haven't heard if she got the part. I know in my heart I can't let her take that risk. (please don't bash me if you don't agree)

We leave for New York on Saturday. Her appointment with the neurologist is on Monday. I have talked with this doctor twice on the phone...he's amazing!!! I had waited for the phone call for two weeks...and during the Savvy workshop last weekend my cell phone was a Sunday morning...and it was from New York. I ran out of the studio and took the call. He spent an hour on the phone with me... prayers were answered! We have a wonderful, caring doctor taking on her case. He has started treating her already (ordering blood work, etc) and we know we are doing the right thing going to see him. The bad news is our referral was denied from our insurance company. We are hoping they change their minds...paying out of pocket is not a good thing. But we are blessed to have found him and it will be worth it. 
I will keep you all updated. 

On another note, I recently decided I wanted to stop working...stop photographing...stop doing the workshops. I wanted to be a full time mom.  I wanted to walk away from it all. A dear friend who is also a photographer said something that has stuck with me. We are creatives. It is instilled in us...and without it, we will goes crazy. It's our outlet. And it's true. Giving up my outlet might not be the best thing for me. I'm still struggling with this. I love hosting the workshops. Last weekend was such a wonderful time with all of the girls. I realized how much I need this. We need our outlets...we need to feel we make a difference... we need our girlfriend time! And the workshops bring me happiness. I'm grateful to have the chance to host so many great, talented women.

Thank you again for your prayers...for Ava and my entire family. We sure can use them. 
Someone told me recently I was being so strong. I've never seen myself as a strong person. But when it comes to your babies, we can become strong. And you know what makes me strong... Ava... her happiness and smile. She's a happy girl! She's not letting seizures and epilepsy get in her way. As long as I see the joy in her eyes, I can be strong. 
And if I ever see the joy leave, I have a feeling I will become stronger in a different a fighting way. I will fight for that girl. Just as all of you will fight for your babies. 



  1. There is nothing like a mothers love! The Lord stands by our side in these times and makes us stronger than we ever thought we could be! My son Roman had open heart surgery at three months and at the time people kept saying I can't believe you aren't falling apart. I couldn't fall apart! I had two other children that needed me and falling apart was the last thing they needed. Praying for your sweet girl!

  2. beautiful post marsha!! such a sweet GLORIOUS beautiful ava girl you have!!
    thanks for sharing with us!

  3. I wish you the best of luck. Practicing her lines may help Ava train other parts of her mind to compensate for any small losses due to the seizures. I agree with your friend about continuing to work. Its good for your mind to be creative and interact. It sounds like you are doing everything right. Mark Bradley

  4. Thank you so much for sharing with us. I have prayed for Ava and your family and will continue to do so. Much love to all of you!

  5. You are a darling woman and should be so proud of writing & fighting for Ava and YOURSELF! I believe that you need 'YOU' in order to help anyone else, and should be so be proud of the fact that you are still taking care of yourself and your needs! I'm truly touched by your story and this article reminded me to continue to pray for you and AVA, so please keep reminding us!

  6. I am so impressed by the grace with which you are handling this. I will definitely light another candle for you both in church this Sunday, and keep you in my prayers. And remember the offer stands - if you need anything while you are in NY please don't hesitate to reach out. When it comes to helping a mom in need, there are no such things as strangers.

  7. Keep the updates on Miss Ava coming our way. We all will continue to pray, reach out to the universe, and visualize healing for Ava. So wonderful that you connected with a doctor who is a good fit. That is good that you know how strong you are! Blessings to you and Ava and your family each day. Catherine

  8. I just read an article the other day about medical marijuana and families moving their children to Colorado in order to get this for their children. The article made it sound like the children had great improvement after taking it....Just a thought. I know I'd want to hear about every avenue available if it were my baby. I'll be praying as well, for all of you!

  9. So sorry for what you're going through, praying for miracles for your family, praying God leads you to make the choices that give you peace

  10. I'm glad she's doing better. It sounds like this will be a long journey for you while figuring out the right medication to control the epilepsy. I really, really hope it is NOT the horrible version of the disease.
    Keep going back to the insurance company to find out why the claim was denied. Was it the way it was coded? Their (lack of) relationship with the provider? It's a major hassle, but worth it if you can work it out. If you don't have the desire to do this, there are health advocates that could assist you. Good luck!

  11. hey Marsha,,,,,,,,I love your story about my sweet Ava really fantastic post I am so impressed. Keep the updates on Miss Ava coming.

  12. Pleace tell us how she is today. I have been thinking about her many times and hope she is doing well. :)